Pen portraits of each individual participant are provided here in an attempt to introduce the reader to the participants of this research and to deliver background information as to the circumstances of each young person and to consider the context in which each of the interviews occurred. It is hoped that by offering a more detailed overview of the ten young people who participated, the reader may appreciate their unique experiences, how this informed the interviews that took place, and
subsequently the author’s impressions and findings following this. This section will also aim to detail the author’s impressions captured in memos and a reflective diary immediately upon completion of each interview. In this section the participants’ non- verbal interactions are reflected upon providing further relevant information.
Participants will not be discussed in order of interview but rather in sibling pairs. Participant one: SibPair1+
Participant one was a 15 year old HIV positive young girl who had originally relocated to England from Sub-Saharan Africa as a young child. She and her sibling moved to the UK following the death of their parents, who had died due to AIDS related illnesses. Therefore, this participant and her sibling came to England to live with their grandmother and uncle. Shortly after arrival this participant reports that she became very unwell and was subsequently admitted to hospital where it was discovered that she too was HIV positive. At the time of interview this young woman was attending full-time education and reported enjoying school and had plans to attend university. She also reported having a healthy social life although her friends remained unaware of her HIV status.
Participant one appeared highly anxious both before and during interview. She requested that her sibling be interviewed first, which was granted. Initially during the first part of the interview many of her responses were one word replies e.g. ‘yes’ or ‘no’ and it seemed that she struggled to offer eye contact. It was reported to me by the team who work with her that she is typically an anxious individual and that it should be anticipated that opening up, for her, during interview would be difficult. As a result, for a significant portion of the interview there was limited conversational flow and I became reliant upon the structure of the interview questions to keep conversation going. I had also become acutely aware of my own
need to reassure this participant and make the interview experience as comfortable as possible, bearing in mind that I was asking this young person to open up about a potentially stigmatising condition in which she has learned to avoid discussing outside of her family. I wondered whether my anxieties about causing upset to the participants impacted upon the quality of the interview. Nonetheless, this participant became increasing more comfortable and began to elaborate on her responses as the interview progressed and I felt confident that she was able to share her experiences to a level that was comfortable for her.
Participant two: SibPair1-
Participant two was a 17 year old HIV negative young girl who along with her sibling relocated to the UK as a young child from Sub-Saharan Africa following the death of her parents, who died due to AIDS related illnesses. At the time of interview this participant was under the care of her grandmother and uncle who she lived with along with her sibling. This participant, being older than her sibling, reports a much clearer memory of her parents’ death and the sense she made of this. Upon her sister receiving her diagnosis she remembers being convinced that this was a terminal illness owing to her experiences of death through HIV in Africa and remembers being fearful of losing her sister, who was the only immediate family member she had remaining. This caused significant emotional turmoil for this participant who reflected on this a great deal during interview. Interestingly, she also recounted a shift in cultural ideas around HIV that were shocking to her. She
remembered a time in Sub-Saharan Africa in which HIV was openly spoken about and people were supportive. This was starkly at odds with the UK experience of HIV in which she and her sibling were informed of the importance of secrecy regarding HIV by both their family and the hospital staff. This participant reported a strong bond with her sister and sense of gratitude that she survived and can be with her. Participant two was also highly sociable and academically focused.
The interview with participant two lasted much longer than with her sibling. She was very confident in answering all questions and expanded on these in great detail. This was my first interview for this project and I became anxious that conversation was flowing ‘too well’ in terms of not sticking to the interview
schedule clearly, regularly going off on a tangent that felt pertinent to the participant. During this interview I found myself feeling saddened by this young girl’s
experiences and the emotional difficulties that have occurred as a result. Following interviews with this young woman and her sibling I also felt shock given that my expectation, despite the literature to the contrary, was that those diagnosed with HIV would experience more difficulties and in this sibling pair that did not appear to be the case. This made me realise that I had not fully acknowledged the challenges faced by those affected by HIV but who are not living with HIV themselves. Participant three: SibPair2+
Participant three was a 19 year old HIV positive young girl who was born and raised in the UK. At the time of interview she was an A-level student at college with strong career ambitions. Participant three comes from a large family and lives at home with both parents. She has two younger siblings and two older siblings. She is the only sibling of five to have a HIV diagnosis but is also aware of her mother’s positive HIV status, reflecting that she and her mother ‘go through HIV together’ and therefore she does not feel ‘lonely’ in her condition. This participant does not recall a time that she became physically unwell due to HIV and has been stable medically all her life in terms of HIV.
This participant was very confident and appeared relaxed throughout
interview. She seemed comfortable and happy to share her experiences and have her voice heard. This meant that conversation flowed well and that the interview lasted somewhat longer than expected, but this facilitated participant three conveying her experiences in a manner that she felt comfortable with. Throughout this interview I spoke very little and occasionally prompted the participant but she was readily able to offer detailed and rich responses. My reflection on this interview was one of admiration for this participant who described a great deal of emotional burden as a consequence of HIV, yet she conveyed herself as a strong young lady who was determined to rise above the challenges she faced.
Participant four: SibPair2-
Participant four was a 14 year old HIV negative young boy who was born and raised in the UK. At the time of interview this participant was in full-time education and reported to enjoy school. He lived at home with both parents, a younger sibling and two older siblings. Only his older sibling and mother were HIV positive within the family. Participant four had many hobbies including a keen
interest in sports and interest in being a musician which came across during his interview. This participant described a limited understanding of HIV and felt that this was something to be avoided both cognitively and emotionally where possible.
The interview with participant four was approximately 30 minutes shorter than all other interviews. He openly discussed that his view was that HIV should not be spoken about or even thought about and therefore the interview which was
designed to elicit this information was extremely difficult for him. Initially, I became aware of his anxieties and facilitated a conversation around his hobbies and interests in the hope of easing his anxieties and engaging him, however this proved
ineffective. Throughout the interview any question focused on his experience of HIV was met with single word responses or a general “I don’t know”. Any attempt that was made to gain clarification or elaboration on responses appeared to upset the participant and so the decision was taken to allow him to complete the interview comfortably, answering in whatever manner he felt able. I wondered upon completion of this interview if this reflected my anxieties that mirrored the participants. I was aware I did not want to give any participant of this research a negative experience of discussing something that typically is not discussed for them and felt it important to provide a positive experience for all participants.
Participant five: SibPair3+
Participant five was a 16 year old HIV positive young man who was born in Sub-Saharan Africa and moved to the UK over ten years ago. His parents were separated and he lived with his mother and three of his siblings. In total, participant five has five siblings; three older and two younger and some do not live in the family home. Within this family only participant five and one of his siblings is HIV
positive; he reported being unaware of his parents HIV status explaining this was not openly discussed within the family. This participant was confident and relaxed throughout the interview and reports having great ambitions and a good group of friends. His HIV status remains hidden from his friends.
Participant five can be described as a rather placid and polite young man who was immediately comfortable with the interview. Interestingly, participant five explained his experience of being HIV positive in a very different light to all other participants. He described being happy with his diagnosis, recognising the ways in which HIV has contributed to his life, in terms of being a motivator and keeping him
healthy. He informed me that HIV was something he valued as a unique experience he was fortunate to go through and something others cannot relate to. In terms of my reflections I struggled with my own thoughts regarding participant five. On the one hand, he explained this overwhelmingly positive scenario but also discussed the difficulties he faced in terms of stigma and his desire for a cure. This left me
wondering if participant five felt truly able to share his honest reflections or whether what was observed in interviews was an internal conflict that was unspoken in interviews, leaving me to question whether he was defending against his emotions. This would be unsurprising given that participant five and his sibling shared a perception that their family appear emotionally guarded also.
Participant six: SibPair3-
Participant six was a 21 year old HIV negative young man who was born in Sub-Saharan Africa and moved to the UK over ten years ago. His parents had separated and he lived at home with his mother and three of his siblings. In total, participant six has five siblings some of whom are older and no longer live in the family home. Within the family only two of his siblings are HIV positive and this participant was unaware of his parents HIV status, explaining this was not openly discussed within the family. At the time of interview he was in full-time education and was particularly career focused.
The interview with participant six was the longest of all the interviews. This participant presented as a highly anxious and restless young man. He was confident in interview and answered questions in vivid detail, but described great sadness and anxiety in his personal life which he attributes to HIV. Participant six struggled with the lack of communication regarding HIV in his family and felt pressure to not express the many worries he had. His principal concern was that he was at risk of ‘catching’ HIV himself and was regularly seeking HIV screens to ease his worries. Participant six was hyper-vigilant to the perceived threat of HIV which he
experienced as a significant stressor in his life. He perceived others outside the family as an additional threat: given that HIV was kept secret within his family, he anticipated others would also conceal their HIV status and place him at risk.
Participant six also did not discover HIV affected his family until his adulthood and consequently felt mistrusted by his family who he experienced as keeping the secret from him.
My reaction to participant six was very strong on an emotional level, and this interview left me feeling overwhelmingly sad for this young man. This interview in particular highlighted for me the impact of stigma on those families affected by HIV and the damaging effects that intense secrecy is having for some young people both inside and outside their families. This interview also allowed me to make
comparisons with previous interviews in which the HIV negative sibling appeared to be significantly more burdened that the HIV positive sibling and left me wondering why this was. After a debrief with this participant we both decided that I would speak to the AALPHI research nurses on his behalf to identify some methods of support for him as he was keen to vocalise his anxieties with others following this interview.
Participant seven: SibPair4+
Participant seven was a 15 year old HIV positive young man who was born and raised in the UK. His parents were separated and he lived at home with his mother. Participant seven had three siblings and he was the only sibling who was HIV positive. Participant seven is a twin and selected his twin brother to also be interviewed for this project. Although this participant was in full-time education at the time of interview he expressed very little interest in his studies and was unsure whether he would attend college. Within the family, only the participant’s mother was HIV positive. He also expressed that HIV is not spoken about within his family and that typically he was not used to talking about his condition.
The interview with participant seven was difficult to initiate and his anxiety was apparent. He began by offering one word responses yet despite this he began to ease into the process and became much more reflective as the interview continued. This participant reflected on a sense of responsibility he felt as the HIV positive individual to contain the emotions of his family. He expressed that he felt a need to contain his own emotions and portray himself as well adjusted to HIV in an attempt to limit the upset of his family, holding the view that should he display his upset that this would in turn upset others. According to the participant this left him feeling powerless in response to HIV and this gave him a ‘just get on with it’ attitude to his condition. However, he was fully able to share his experiences of his struggles behind the ‘front’ that he puts on for his family and those close to him. The
resilience of participant seven was impressive and left a lasting impression with me. It struck me just how much this young person, and others interviewed, were
managing from a psychological perspective, and yet he maintained this air of maturity and consideration for others whilst facing his own significant but hidden challenges which I found inspiring.
Participant eight: SibPair4-
Participant eight was a 15 year old HIV negative young man who was born and raised in the UK. His parents were separated and he lived at home with his mother. Participant eight had three siblings, only one of which was HIV positive. Participant eight was a twin and interviewed with his twin sibling. This participant described his understanding of HIV to be limited and explained that HIV is not spoken about within his family. He is aware of his mother’s positive HIV status and that of his brother. Despite not discussing HIV much with his mother he described that both twin brothers will regularly discuss this topic and support one another.
Throughout the interview this participant did not describe many difficulties for himself and appeared to be well adjusted to HIV within the family. He did however, describe a strong sense of guilt that stems from his knowledge they are both twins and that he was not born with HIV. He described a struggle to understand why he was not HIV positive or whether he ‘deserved’ to be HIV negative instead of his brother. In addition to this he reported a strong desire to ‘take’ HIV on behalf of his brother, if he could. I got the sense that this left him feeling a need to support his brother at all times despite his own admission that, at times, this can be ‘too much’ and that he has found himself unmotivated to support his brother, although he continues to do so. He used this interview as an example, his brother had asked him to participate and his inclination was that he did not want to but could not let his brother down. I therefore clarified the consent procedure and asked participant eight if he would like to withdraw, although he expressed a desire to continue with the interview. I wondered whether this could in part be explained by this guilt that dominated parts of the interview conversation. I particularly warmed to this
participant’s caring nature and the way in which he described his love for his brother and the many ways in which he supports him.
Participant nine: SibPair5+
Participant nine was a 17 year old HIV positive young man who was born and raised in the UK. His parents are separated and he lives at home with his mother and three siblings. This participant was the only HIV positive sibling and both parents were HIV positive. Academia was a real focus for this participant who had strong ambitions for his future. Participant nine described a real effort on his part to withdraw from others around him and isolate himself as a way of managing his emotional responses to HIV. He discussed how HIV was not typically spoken about within his household although he was aware that he could access support from parents, although he opted not to. His sister, with whom he interviewed, was described as a strong source of support for him and a person who he felt most comfortable discussing HIV with.
Although participant nine informed me that he usually tries hard to avoid HIV, this was not observed during interviews and he appeared very comfortable discussing his experiences. This interview was longer than most other interviews and